After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Play Date

I have to say, I am not a huge fan of surprises. But sometimes, the best gifts are those fabulous, unexpected events. This one, which occurred in the last little while, was one of them.

It started with the door bell ringing and my mom answering to find a little girl, about 5 years old, with a tomb-boy demeanor on our front step.

“Hello. Can I help you?” My mom, who is very sweet with kids, asked.

“My name’s Holly. Can your daughter come outside to play?”

“Oh, well, my daughter is a bit older than you, she’s an adult.”

“Oh.” Holly answered, looking dejected.

“You can come in to meet her, though. Her legs don’t work right, so she can’t come outside, but you can go to her.”

Holly took a step back. “I’m not allowed to go into stranger’s homes.”

My mom swallowed a laugh. “Well, I know your mommy. And what if I stand right here in this door way, keeping it open, and you can walk straight into that room and meet my daughter Cecilia. You can leave anytime you want.”


Holly looked back, glancing at her house right next door. “I guess that would be alright.”

“Cecilia, you have a visitor!” I heard my mom yell these words as I looked away from my computer screen on the couch. It was the first I had learned of the ongoing.

I tried to keep my eyes inviting and the same size as I watched the pint size person strutting towards me. Her strut halted abruptly when she saw my black wheel chair in the corner of the room. I guessed she was maybe 5 or 6, and I had never laid eyes on her before.

“Hello,” I said, cheerfully, cautiously.

“Hi.” She said, and froze just in the room.

I felt lost. “My name’s Cecilia. What’s yours?”

“My name is Holly. I came over to play with you, but your mom said you can’t play outside.”

“Oh.” Nonplussed. “That's right, I can’t play outside. Didn’t you just move in next door?”

“Yes.” She marched over, confidence regained, and sat down in the chair next to the couch where I was. “Your mom said your legs don’t work. What’s wrong? Will they work tomorrow?”

I blinked again, quickly thinking of an age-appropriate answer. “My legs got sick; so I stay on the couch or in my wheelchair. But they’ve been sick for a long time, so they won’t be better tomorrow.” Her eyes grew. “They got sick with something you can’t catch.”

Holly blinked, looked down at her own legs. “My legs aren’t sick.”

“No, love, your legs are just fine.”

Holly swung them out in front of her. “Yes, I have nice legs.”

“Yes, you do.” I couldn’t suppress my laugh.

“So what’s that thing on your face?” Holly asked.

I blinked again. Where was my mother anyway? “This chord to my nose? It brings my oxygen, to help me breathe. You see, my whole body got sick, so this helps me breathe so I can talk to you.”

“Huh.” Holly nodded wisely, looked around. “So we’ll just have to play inside here then. I brought my bunny,” she added, showing me her much loved bunny/bear. Holly started looking around, I imagined for toys, when her mother comes running into the room, breathless.

“Holly!” Her mother exclaims, looking both bewildered and relieved.

Without missing a beat, Holly says, “Yes? You told me to go out to play, so I found my friend, Cecilia,” (I had been upgraded to friend status). “She can’t play outside because her legs are sick, but mine are fine, and she has this tube to help her breathe, so we’re going to play in here.”

Simultaneously, Holly’s mother’s eyes grew 3 sizes, and we all burst into laughter. 

Holly had it just right. But my goodness, children can say the darnedest (and most fabulous) things.

The Crux of The Matter

The Crux of The Matter